APL, Information and SupportInspired by Anita’s Journey through Acute Promyelocytic Leukemia

I’m always watching for first hand =
information from
people that have been treated for APL.     Such =
stories don’t
appear very often.  

This article describes a 41 yr old male named Rick =
that
experienced a lot of complications apparently from Vesanoid.   =
Seems
like any drug that is active against APL blasts can cause tremendous =
potential
problems like this.     Rick may have suffered from =
“retinoic
acid syndrome” as the blasts were being cleared.   =
Arsenic can
also cause similar side effects.

I’m not sure its always fair to report =
problems like
this as “Vesanoid specific” (the article doesn’t use =
is term
but the cause and effect is implied).

My concern is that people might read an article =
like this
and assume Vesanoid is a “bad drug.”   Well, a lot =
of
drugs including Vesanoid have potentially terrible side =
effects.  
The problem is that untreated, or poorly treated leukemia is usually =
worse than
any drug!  

Anita experienced some troubles while she was =
taking
Vesanoid but nothing severe like this article mentions.

Its nice to see that Rick is doing =
well.   I
wonder if he will also receive any Arsenic treatment?    =
Some
treatment centers are offering both Vesanoid and Arsenic for their front =
line APL
treatment regimen now.

h=
ttp://www.knoxnews.com/news/2009/oct/12/returning-the-favors/

Chris

The next time I feel lazy or unmotivated – I =
will try
to think of this interesting guy,

Com=
petitor
takes on Ironman after heart transplant

Chris

CML is one of the few leukemias that you sometime =
hear the
word “cure” in connection with.   You also hear =
the “c”
word occasionally in connection with some of the treatment regimens for =
APL.

Anita has a friend that has been treated =
successfully (so
far) with Glivec so I was interested to hear this story,

http://www.upi.com/Top_News/2009/10/0=
7/Leukemia-drug-Australia-trials-promising/UPI-80311254947768/

Chris

I thought this article was interesting.  It =
discusses a
new leukemia diagnostic / detection technique that should help improve =
the
ability to detect extremely small residual amounts of leukemic =
cells.

I would imagine that this method might be used to =
gather a marrow
or blood sample that would then be used with a  sensitive PCR test =
for
residual leukemia.

http://www.modernmedicine.com/modernmedici=
ne/Pathology/Technique-May-Aid-Detection-of-Residual-Leukemia/ArticleNews=
Feed/Article/detail/632256?contextCategoryId=3D40165

PCR tests are sensitive to begin with and this =
technique
might be able to help make them even more sensitive.  My question =
is what should
be done with an even more sensitive detection method for leukemia =
cells?  

Anita’s Dr’s always seemed a bit unsure =
what to
do if a positive PCR test was to come through for her.   The =
best
answer I could ever get was that “all the Dr’s oncologists =
in our
group would talk” if a positive result came through and they would =
decide
“what do to next” together.    =

I actually liked the “all the Dr’s will =
talk
about what to do next” – that sounded =
reasonable.   
I think that answer is code for “We don’t know what to do if =
that
happens” but we’ll do our best to make a good =
decision.

My thought is that a further improvement of PCR =
sensitivity
could offer an even earlier warning of possible relapse and the need for =
more
frequent testing upon which a decision for further treatment could be =
based if
relapse became more apparent.

I’ll leave it up to you to find, but there is =
an
earlier article on this blog that discusses the fact that a few stray =
(apparent)
leukemia cells don’t always mean a relapse is certain.  =

In fact, cells that exhibit genetic markers (such =
as CD33) that
are consistent with leukemia cells are sometimes found in healthy people =
that
will never develop leukemia!   Points like this help me =
understand
why Anita’s Dr’s were loathe to explain how or what =
treatment
decision would result if a positive PCR test was to come =
in.

Anita is still doing fine, in her second here of =
nursing
school now.

Chris